Low Dose Naltrexone for MS

[hillary180]

I just read all the comments posted and I want to ask how many of you know about Low Dose Naltrexone or LDN for the treatment of MS and alot of other autoimmune diseases.  Thousands of people are using it.  Its not FDA approved so your doctor won't tell yoou about it.  You have to find out by word of mouth like I did.  I went from being unable to stand or gettinginto bed to standing and taking 15 steps with the help of holding on to furniture and walls.  This after one dose.  Even better my last MRI showed no progression of the disease the first time since being diagnosed in 1988. I was interviewed by CBS station out of Jacksonville, FL.  This video can now be seen on YouTube go to Low Dose Naltrexone.  I hope you will check it out.  I have no more pain,numbness,spasms,tiredness, and there are no side effects.  Good luck!

[Quixotic1]

I had to comment on your post.  Your excitement for the LDN treatment is obvious and I am glad that you feel so much better.  Anything that improves the way we feel and function with this disease is very welcome.

But, for the sake of members who are new to the world of MS, and not educated in science I need to make several comments about LDN and about what you have said here and in your public journal entries.

LDN has been around for more than a decade.  It has shown some promise in treating a few autoimmune diseases by real studies and not just by patient report.   It is currently being studied in several locations around the world and results of most of those studies are not in.

I have to take issue with you for claiming that 10's of 1000s of people are taking it.  In looking at the LDN sites I find nothing like those numbers.  Even if I did the fact that people are choosing to take it means nothing about whether it works.  In the 80's I had many patients who chose to take coffee ground enemas or sheep red blood cell infusions to treat their cancers.  Many claimed they were cured.  Time proved them wrong.

You state that these 10's of 1000's of people "all" have "proven success."  This is patently untrue.  Many people are not helped at all.  Many feel better.  What is the definition of "success?"  Is it cure?  Is it arrest of their disease?  Is it improved quality of life?

LDN markedly raises endorphin levels in the body.  Endorphins are the body's natural "feel good" drugs.  LDN also appears to modulate portions of the body's immune system.  So, many, if not most people will "fell better."  This is a great thing.  And LDN may prove to be a very good addition to the treatment of MS and other diseases.  Most of us desparately want to feel better.  However, we know from bitter experience and from rigorous science that feeling better doesn't necessarily equal improvement in the disease.

Naltrexone certainly is approved by the FDA, though not specifically for the treatment of MS, autoimmune disease, cancer, Parkinson's and autism.  However, it is readily available on a doctor's prescription.  It is not malpractice to use it.  "Off-label" use of drugs is common throughout medicine.

Though the side effects of LDN are minimal most people with MS do have an increase in stiffness and there can be problems with sleep, if the doctor is not carefel about the other drugs a patient is taking, its use can be devastating and potentially fatal, as discovered by one of our members here.  She wound up in the ICU and suffered a stroke, because her neurologist did not take note that she was on heavy doses of narcotics for pain.

As to your MRI not showing progression; this is a disease of unpredictable remissions.  Also after 20 years you are at the usual time for MS to begin having less inflammation and fewer lesions.  I would be much more interested in your MRI in 5 years or so.

Most researchers in the field and even on the LDN site itself look to the potential of LDN to improve the quality of life.  Many fewer see this as a cure-all for most of the diseases plagueing mankind.

When you post about this, I would appreciate it if you would stick to your own testimonial and not make unsubstantiated claims that LDN is successful in diseases for which it has not been studied - like cancer (Dr. Bihari's claims are not backed up with any type of documentation, just his own anecdotal stories).  And don't claim that it has proven success for all.  That is just patently untrue and misleading.  I think the lack of responses you had show that people understand this.

For people with MS for whom no other treatment has had success I think LDN makes a lot of sense.  For people who refuse the ABC drugs it does also.  For those who hope to improve how they feel, but wish to remain on a treatment with more proven "success" it is inknown whether LDN will interfere or not.  It is a risk.

Everyone who is interested should look into it, but with eyes wide open.  There are many promised successful treatments for MS out there, including the Swank diet and the Marshall Protocol (which also claims to be successful in a vast range of diseases)  and for each one there are people with testimonials like yours that claim amzing results.

We will be watching for the results of the many LDN studies now underway.

Quix

[monotreme]

I think the best thing people can do is follow the advice of the doctor on the "You Tube" video, which shows the story that hillary is talking about.  The doctor said the best thing to do is to write to your members of Congress and ask them for funding to study LDN.  The patent is expired and there is no financial incentive for the pharmaceutical companies to develop it.  Anyway, the pharm company here in DE is slowly moving much of their drug research to India and will have Indian scientists doing the work. They are very busy cutting costs here in the U.S.

The doctor said that if enough people ask for funding, then the Natl Inst of Health could research it.   I will not comment on the NIH though, for obvious reasons!!!!!!!

Good Luck to hillary and continued success.  I am sorry for the loss of your brother due to complications of MS.

Elaine

[Heather3418]

I have to agree wholeheartedly with Quix's comments.

There are alot of so called claims of cure's and sudden return to normal health, but as Quix says, after so many years of having MS, it is now the time that you would naturally have less lesions and have a much calmer course.  Whether the medication you were taking did the trick, I hope to God that it did.

We all must be careful of claims about walking after being in wheelchairs and suddenly having all syptoms (symptoms) abate.  If this has happened to you, I am elated.  Everyone should stay in close contact with their doctor's and decided upon the best treatment for them.

I wish you good health and continued good luck.  I am glad that this treatment has aparently worked for you. We have to be very careful advertising quick cures, as a means for all those with MS.  Each treatment should be discussed with you doctor.

Best Wishes,
Heather  

[essdipity]

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